Does Your Child Know She or He is Autistic?
March 26, 2008 by Kristina Chew, PhD
Filed under Health
Reseachers at Melbourne’s Alfred Hospital have undertaken a pilot study to investigate a potentially “delicate issue,” why parents decide to tell a child that he or she is autistic, today’s ABC News (Australia) reports. Notes child psychiatrist Jennifer Harrison, who helped run the pilot study:
“The main reason parents decided not to tell their child was that they were afraid of stigmatising the child, they were afraid of labelling the child.
“Some saw the diagnosis in a negative sense, as though it was a bad stamp on them.
“On the other hand, a number of parents – and the majority of parents – actually felt that informing their child of the diagnosis increased communication between them and their child.”
A follow-up study will involve more participants.
We haven’t yet had any kind of formal talk with Charlie about “what he is” or “what he has” or “what he’s diagnosed with.” Certainly the word “autism” gets heard around our household a lot, but not in the sense that”you have autism and that’s why things are tough.” It’s simply something that gets talked about.
From observing Charlie, it seems to me that he has a sense that he’s not like some other kids and that he does things differently from them. I have a vivid memory of a boy who had come to play as a “peer mentor” last year; this boy was riding Charlie’s scooter. Charlie likes to ride the scooter up and own the driveway, slow and steady—-and the other boy was doing wheelies off the front porch and down the stairs and striking poses of an Extreme Sport sort. Charlie stared and looked distressed: A therapist friend was there and she said, “I think he’s worried the scooter’s going to get broken!”
Whatever Charlie thinks when he hears the words “autism” and “autistic,” we do seek to emphasize that he’s fine just as he is and that—-when the going gets rough (getting on the bus this morning; Jim had to leave early for work, Charlie is still readjusting to getting up earlier for school after spring break; there were tears and a slow descent of the staircase)—-we try to communicate that we understand he’s not feeling good, that it’s not easy, that we know he’s trying.
And that there’s nothing to be ashamed of about that.
My seven year old autistic son wanted to know if he was “normal”. I said he was and then later asked him why he wanted to know. He said, “Because I know everything.” I was worried that he thought being different was bad and instead he saw deviating from “normal” was a good thing. I replied by saying, “Oh, you mean that you are above-average. People can be “normal” and be below-average, average or above-average. I know it was a dodge and I am going to have “the discussion” with him very soon. It is just that he still has some auditory processing issues and at times I get scared he won’t understand. He has both a photographic visual memory and and auditory memory, but beyond that, I swear this kid is psychic when it comes to emotions. There is a lot he knows or questions, but doesn’t express. I know it has impacted his self-esteem. At five years old he tearfully asked me why I would even want him. He has been obsessed with the story of Pinnochio from day one. Had us read it to him every night for two years. I think all the therapies he’s had since the age of three have made him feel as if he isn’t a “real boy.” Happily, he is doing so great now. He is doing well in a typical first grade class and having lots of play dates. What frustrates me even more than the other kids some times are the adults who throw labels around without asking me what I’ve actually told my son. If I know anything about Autism it is that it is so damn individual. I am all for throwing labels around to get services, but at the end of the day our children are absolutely unique – Autistic and typical. I think everyone could do with a huge dose of sensitivity.